Help Fund Maddie through MS
Hey friends,
I'm Maddie and I have relapsing and remitting Multiple Sclerosis. It is really debilitating, painful, and constant, so living day to day is a struggle where I'm unable to work or even take care of myself. At times it feels like a punishment for the many traumas, losses, family stresses and pressures throughout my life - like they are finally coming to a point where my body is feeling it too, and it's unbearable. My fiance and I are trying our best and we've applied for disability but the process is long and complicated and our savings are gone and our bills, medical and otherwise, are piling up. This makes it challenging to get the necessary food, medications, and counseling for me to begin to get better.
For those of you unfamiliar with MS here is the short version of what it is: MS is a neurological condition where the immune system gets it's facts all messed up (after years of stress and psychological damage) and starts attacking the nervous system. The spots where they damage the nerves are called lesions and they can happen anywhere in the brain or spine. MS is different to each person who has it, and for me the symptom management has been particularly painful and challenging. I have lesions in both my brain and my spine and I am still learning how to deal with the MS diagnosis along with all the physical and mental changes it brings with it. I never prepared myself for this kind of life and it feels like everything changed in just one day. 
In Aug 2016 I went to sleep a healthy, recently graduated 23 year old about to start a challenging new job and ready for "my life to begin". University had been really challenging since I worked full time to be able to live on campus and put myself through school. I graduated with a BA and was really looking forward to what I knew was a very bright future. I was making life plans and I was ready to take on the world. But on that morning in August, when I woke from my dreams, my right leg was tingling and, when I touched it, it was numb.
It was honestly the strangest thing. Have you ever slept on your arm funny and then when you tired to move it instead of moving it stings with pins and needles? Or the feeling when your foot "falls asleep"? The sensation that I awoke to was something similar to that but all over the entire bottom half of my right side. Just the right side.This concerned me but it also happened at a bad time, as these things always do, and I was off to my new full-time jobs training.
As time went by the pain got worse fast. Suddenly the "pins and needles" sensation was more like a wild-burning sensation and I began to become frustrated at this new physical limitation. The numbness and tingling made it challenging to walk from one place to another and I suddenly found myself with less energy than before. I went from doctors appointment to appointment, telling them that the pain had persisted and gotten worse. Most doctors seemed more interested in getting me in and then out the door than figuring out what was happening to me, others simply shrugged and agreed that the pain was weird.
It didn't take long for the pain to affect my work and personal life. I had to leave my job and focus on my health and (hopefully) find the source of the pain. This was a terrible time for me. The employer I worked for at that time disregarded me when I told him I needed to focus on my health and made me feel pressured to stay in the job till the end of the term. When I did leave, for many other reasons as well as my health, it was made clear to me that all my employers thought I was leaving because I "couldn't handle the stress". I think my boss didn't want to correct them and tell them it was for health reasons because then it wouldn't look good on him. I started to feel like a failure and really guilty for everything: leaving the job, burdening my family, not having a "plan" in place, and a low-sum bank account.
When I left that job it was Christmas and I got a break from work but not stress or pain. It was clear that my family and friends were confused and disappointed in me for leaving my job, especially since I had no plans or another job lined up. I kept telling folks I had pain, but it was always more intense than it felt possible to believe. This was the first of many financial low points. I had some savings, but not enough to give me much to buy Christmas presents and couldn't live without a job for long. I was really scared. The pain was so bad and I suffered so much each day, and yet I felt like I had little time to devote to my health. 
After the holidays I moved in with my parents and tried to devote all my time to finding out what was causing the mind boggling pain. I went to see my family doctor, now that I was living close by, and after explaining what was going on he suggested I "wait it out." It had been nearly six months at this point. I knew that this was going to happen, which is one of the reasons it had taken me so long to go and see him. I pushed and insisted that he send me to someone, anyone, who could tell me something. I told him that I had tried everything else, and no one knew what was wrong. He rolled his eyes and gave me a referral to a neurologist, insisting the entire time that it wasn't necessary and the pain and numbness should just go away.
I hated how I had to fight to get the care I thought would have been a "no brainier" after I explained my situation. It was really bad and I was honest. For instance, before I was prescribed my pain medications I couldn't sleep because the burning nerve pain was (and still is) 24/7 and I would have to drink beer just to be able to even start to fall asleep. The pain was so much.
After what felt like an eternity I was sent to a neurologist and then for an MRI. In this time I had to get a job and I moved in with my boyfriend (now fiance). I got a full-time position as a receptionist and was really proud of my 9-5 job, but I was in so much pain daily that it was hard to concentrate at work. At around the 3 month mark of working there I got the results from the MRI and was diagnosed with Multiple Sclerosis. I don't remember much else from that appointment, I went into shock. I had to quit my job after taking some months off, and all my savings went to my living expenses over the next few months. But those eventually dwindled again and I had to push myself to work another job, while trying different medications, not sleeping well or at all, and dealing with fatigue.
My diagnosis truly shocked me and changed my life. I have done my best to battle against MS, but it is starting to gain some ground. My neurologist has told me that I'm one of the "unlucky" ones who has a lesion, or "scar" on the spine in addition to in my brain. This is what is causing my constant, terrible pain and is what I call the "burning" feeling. My MS is has been progressing quickly, so fast that my fiance and I have hardly been able to catch our breath. We are trying to stay organized but the illness takes a lot of energy out of us both on a daily basis.
I am medically not able to work and so my fiance is the provider for our home and my care-giver. This puts a lot of the stress and burden of life on him and we are starting to feel the impacts. It took us a long time to adjust to life with MS, and as we were right at the cusp of getting somewhat settled, I was in a car accident. A woman made an unnecessary, last-minute lane change and I didn't have enough time to stop. This impact hurt my back and leg, which made all my other symptoms worse. It also took away my the independence I had worked so hard to keep and I my leg and spine are even more damaged now, making it impossible for me to drive. I have to bus or taxi to my appointments (I can't/ don't really go anywhere else anymore) and these expenses add up.
I suffered a lot mentally as well, since I thought that pain couldn't have gotten worse, but the accident proved me wrong .I now suffer from ongoing back and nerve pain which has brought on more symptoms like worsening migraines, head aches, and neck and back pain. I now require regular physio therapy appointments, massages, and more just to try to get back to where I was physically before the accident. The new pain also made daily chores hard and, in some cases like dishes, impossible for me to complete. And if I push myself I put my health and comfort at risk.
MS really sucks and I find myself day dreaming about getting items that would be able to help me keep some independence, like a scooter and a an "Alinker" walking aid bike. It's strange to be only 26 and have to worry about how I will be able to get myself independently from point a-b. These currently feel a million miles away since my fiance and I have been living pay-check to pay-check and our debt has been growing. I have been very stressed because I want to contribute but it's hard for me to even physically get myself from my house to the grocery store and back. 
We need this money asap as it will be put towards buying me the necessary walking aids to help me live a comfortable and independent life. It will also help pay our credit card debts in full and rent for the next few months so we can focus our my health and routine for a short while.
Anything helps, and I mean this from the bottom of my heart. MS is a daily battle and our families are not able to afford to support us for much longer. I feel like I'm on a sinking ship and it's getting really hard to feel hopeful. Please consider supporting my little family as we try to navigate the challenges of MS and daily life. 
If you're interested, I have also have a website: amisbehavinghuman.com where I am posting my daily experiences with MS and my books (my dream is to be an author). Please take a chance to check it out and thanks so much for reading this and for your support, it means the world to me.
P.S, the dog in the picture is Merlin. :) He is a little angel and the sweetest little dog.